Lurker now unraveling...

TulipsOnTuesday

I honestly don't think I can write all of this out again, so excuse my posting a link to my blog post instead.  I feel so alone and scared, and I know that so many of you are where I am too.  I think I just need some support from people who....get it.

https://ourstrokeofluck.wordpress.com

 

J+MS

I'm sorry. I read it, I don't know what you're going through or what to say but you're not alone.

ToastieSimons

I am bumping fom an iPad so it's a pain to type, but I have been exactly where you are. Myboys have a rare mutation that no one has really heard of. My oldest ds is hypertonic and has intellectual disabilities. We spent 9 days in the Nicu because they didn't know what was going on.  It gets better. I promise. Grief is a hard path to travel but there is only one way out, going through it.  Its hard to be the parent of a child who is grossly misjudged because he can't act his age, but a lot of us here feel that way regardless of diagnosis.  The only thing the neonatologist in the Nicu could tell us was that since he learned to eat he would have some skills in life. Severely disabled children don't learn to eat.  It was a hard pill to swallow but it made it easy in one regard. We were always surprised by the milestones he did hit because we didn't expect him to ever get there. 

CaptainSerious

I keep thinking that I will find someone who understands how this feels.

I know you don't know us in real life, but you have found an entire message board full of posters who understand how it feels.  We have children with all different diagnoses, but we are all traveling your path.

I adopted two boys with special needs, but the one that has me reeling most (at least within the last few months) is my older son's recently diagnosed fetal alcohol spectrum disorder.  When we figured it out this November, I had many of the same thoughts about what this will mean for his ability to be an independent adult and mourning the future that won't ever be.

I wasn't going to post this here, as I am a new poster, and I'm sure many of the posters here have already seen this, but I really identified with it, and posted it on my adoption board, where many of the posters are/will be parenting children with special needs.  You'll see many of the posters comment that they also make a comparison to infertility, but if you read it through, I think you'll see that you are not alone and support can be found, even if it isn't directly in your neighborhood.

https://community.thebump.com/cs/ks/forums/thread/71082631.aspx

Rachel Sonnier

Spooko:

I'm so sorry.nbsp;

Ditto. So so sorry. hugs

ally81698

I get it.  Maybe not to the same extent as you but I definitely get it.  My daughter had a stroke when she was born.  She is almost 2, not walking, barely talking.  We have a lot of unknowns about her future and that's how it's been since she was born.  I don't have much to say other than you are not alone and that there are a lot of people on here that feel the same way as you.  My biggest advice is to always look at how far he has come.  He is absolutely adorable by the way!!

BunnyCookie

i'm so sorry. sending hugs. i am new here too but i hope this board can be a source of support for you.

zoeyandsummersmom

ToT,

I have been meaning to contact you (we were both on the tribe and Angela reminded me about Owen). If you ever want to get together locally, let me know. My daughter suffered both a brain bleed and an infarct at birth. A little over a year later, she refuses to eat and is fed 99% via g-tube. So, we are still in that wait and see mode. PM if you want to talk or get together.

MaxandRuby

ally81698:

I get it.  Maybe not to the same extent as you but I definitely get it.  My daughter had a stroke when she was born.  She is almost 2, not walking, barely talking.  We have a lot of unknowns about her future and that's how it's been since she was born.  I don't have much to say other than you are not alone and that there are a lot of people on here that feel the same way as you.  My biggest advice is to always look at how far he has come.  He is absolutely adorable by the way!!

I want to reiterate what this poster said because I, too, get it but also probably not quite to the extent that you are dealing with. While my son didn't have a stroke (he has CP) and he has many physical issues that leave me with many of the same questions you ask yourself. He turned 3 a few months ago and I still have some of the same questions. I also find myself trying to not notice stares from other children and adults when DS2 is in his walker or wheelchair. It is what it is though and I try my best not to focus on negativity like that (it can be really hard some days). Like a previous poster stated, I do try to look at what he CAN do. You are in my thoughts and I hope that today things, if even for 5min, are just a little bit better today then they were yesterday.

gimmietimmies

Just stick with us. You are welcome to unravel here. Believe me, I've come apart more than once. This is probably the only place I can go that will "get" me. IRL, no one can comprehend. If you ever have to make that trip to Calgary, shout, and shout loudly. I will come and sit with you at ACH if you need someone.

ally81698

MaxandRuby:

ally81698:

I get it.  Maybe not to the same extent as you but I definitely get it.  My daughter had a stroke when she was born.  She is almost 2, not walking, barely talking.  We have a lot of unknowns about her future and that's how it's been since she was born.  I don't have much to say other than you are not alone and that there are a lot of people on here that feel the same way as you.  My biggest advice is to always look at how far he has come.  He is absolutely adorable by the way!!

I want to reiterate what this poster said because I, too, get it but also probably not quite to the extent that you are dealing with. While my son didn't have a stroke (he has CP) and he has many physical issues that leave me with many of the same questions you ask yourself. He turned 3 a few months ago and I still have some of the same questions. I also find myself trying to not notice stares from other children and adults when DS2 is in his walker or wheelchair. It is what it is though and I try my best not to focus on negativity like that (it can be really hard some days). Like a previous poster stated, I do try to look at what he CAN do. You are in my thoughts and I hope that today things, if even for 5min, are just a little bit better today then they were yesterday.

Yep - perfect example... I just saw a post that I wrote about a year ago.  In these past few months, DD now sits up on her own, goes up and down stairs, crawls and cruises furniture - how can I not be so proud at all of that, given the cards we were dealt.  Some days are definitely hard but I've learned to accept what has happened to her.  As long as she's not giving up, there's no way I am - we must stay positive and strong for everyone's sake

mopdop2000

Sigh. I do know what you're going through. When we got Sir I's diagnosis I was with my mum, and my first reaction was "I am never going to be able to do what I want all day, like you do. We'll never be empty-nesters." Two years later there are still days when I feel like that. The grief of what our life would look like, and what HIS life will be like, still ebbs and flows. But we are now so immersed in the day to day struggles and triumphs that what he will be able to do when he's older isn't that important anymore! I also get how you feel when people expect more from him, due to his age/size. People ask him all the time "How old are you? What's your name?" At 4 he has no idea what age he is, and while he recognizes his name, he can't say or sign it. I don't always feel the need to tell people he's non-verbal, so I answer and add 'he's a man of few words.' or something of that nature. I gave up on the story time, music lessons etc b/c it just wasn't fun for either of us. I have a few close freinds with kids the same age os my boys and that's where we do our socializing. Hubby & I taught the pre-school Sunday School class at church this week. As they were playing at the end, hubby noticed I had tears in my eyes and asked what was wrong. "Do you realise these kids are Sir I's age? Sir I who is in the 0-2 nursery right now b/c that is his cognitive age?" Please don't feel alone. While you may not have any close friends/family members who have kids with SN's, the internet is a great place to get the support you need. We get it. We're walking it with you.

adge1119

i know exactly how you  feel.  100%-without a doubt, even when you said "i love him, i resent him, and then i feel guilt".  my son has a rare genetic syndrome...he is one of 50 kids ever diagnosed with his syndrome.  it is expected that he will not live to become an adult.  it hurts with every fiber of my being to say that or type it but it is accepted.  i spent the first year of my son's life a tortured mess about him and what he had gone through and had yet to go through.  like you, it was the anxiety and worry about what his future would hold.  to be honest, it does get better.  it certainly doesn't feel like it ever will but believe me, it does.  it comes with every smile step forward, every smile, every experience.  that's not to say that i am not on the verge of puking my guts up every time we have surgery or take on a new specialist or the sadness that hides behind my smile when children younger than him call him a baby because we have to hold him or they see him in his stroller.  what i have learned is that i can't change anything, i have to embrace it.  i love my son's special needs daycare.  i'm more involved with the special needs community and am now on the advisory board for my local children's hospital.  my son has made me into, honestly, a great person.  a more vocal person than i ever dreamed i could be.  it sucks and is the best thing all at the same time.

 

you will find a lot of support here.  also check out mommies of miracles on the web and facebook.  i am always open to talking as well.